Happy Halloween!

Didn’t get a good picture, but oh well.  Tried to pull off a hippie.  Just glad I went.  BP was so low, I didn’t think I was gonna make it. Can you tell by my purple legs? Wish I could say those were stockings.

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Why Your Reaction To My Feeding Tube Makes Me Cringe

When someone sees or hears about my feeding tube for the first time, I tend to get a lot of questions like,

“What is that?”

“What happened?”

“Are you okay?”

The questioning doesn’t bother me; I don’t mind explaining.  I smile and reply that I have Dysautonomia and gastroparesis, at times even thanking the person for asking.

Sometimes I also get the question, “Are you recovering from an eating disorder?”

When I answer no, I get reactions such as:

“Phew!  I was afraid you were one of those girls trying to starve themselves!”

“Oh, so you actually have a problem. You have a real illness.”

I know they are probably well-meaning, but I cannot help but cringe a bit at their response.

I myself have never suffered from an eating disorder.  However, I have had my struggles with major depression, and let me assure you: mental illness is a big deal.  To constantly battle your own mind is something I wouldn’t wish on my worst enemy.  It’s isolating, painful, and absolutely exhausting.

I cannot even begin to imagine how hard it must be to respond to the questions I’ve gotten while actually having a mental illness like an eating disorder.  People have gone as far as apologizing for making an assumption about my tube, as if the very idea of having a mental illness should disgust me.  No wonder people are so afraid to seek help…

The mental illness stigma in our society needs to change.  An eating disorder isn’t simply a girl or boy who wants to look like a model.  Depression is so much more than being sad.  I have watched mental illness destroy the lives of dear friends and tear apart my own family, physically and emotionally.  It’s very real, very serious, and much more common than some like to think…

No, I do not and have never had an eating disorder.  My feeding tube was placed because of severe autonomic dysfunction and a paralyzed GI tract, and while my tube can drive me crazy at times, I am not one bit ashamed of the thing helping to keep me alive.  But those in treatment for mental illness should not be ashamed either.  As a matter of fact, they should be proud of the courage it took to seek out that help!  The only people who need to be ashamed are the ones who have the audacity to belittle someone else’s fight.

Ode To My Feeding Tube

Oh, my dangling companion

Precious link to my jejunum

Once enemies, now my closest confidant

Inseparable team

How I appreciate your friendship

Your quirks, clogs, spills and drips–

I’ve grown to love them all

Tube that makes me normal,

Tube that sets me apart.

Sustainer of life, my ticket to the future

Proudly protruding from my abdomen

Durable through the constant tug-of-war

Between inside and outside

Illness and wellness

Life and death

Warrior, bypassing paralyzed organs

Knight in plastic armour

Surpassing the traitors within

Reminder of a winding journey of ups and downs

Pain and triumph

Sign of strength yet revealer of weakness

Thank you for your service, you beautiful little paradox

(Written for ENG 289…lol)

PA Appreciation Week

Happy National Physician’s Assistant Appreciation Week!  Let me introduce you to the most amazing PA out there- Sharon Johnson.Sharon - Edited  This lady has been there for me in some of the hardest times of my life, fighting for me and helping me to find my voice.  I have put her through so much since I’ve been her patient– everything from being manic on SSRIs (allergic to all SSRIs and was on 3 of them at once- eventually resulted in serotonin syndrome) to three surgeries and the complications that came with them.  Oh, and then of course coming to her with my incredibly complex medical issues and often fragile mental state.  She has literally seen me at my absolute worst.  Others might have run or refused to see me as a patient…but not Sharon.  Sharon has never once given up on me.

Recently, one of my (former) doctors aggressively inserted himself into my life, making gross accusations and false assumptions.  He ripped my life right out from under my feet…but even worse?  He went after Sharon, threatening her and her license.  It was horrible.  But what did Sharon do?  Not only did she defend herself, involving her supervising physician and the head of the practice, but she also stuck up for me!  In a major way.  She defended me both as a patient and as a person.  She is tough as nails, that one.Screenshot 2015-10-10 at 6.32.44 PM - EditedI was SO nervous to see her after the awful fiasco with my aforementioned physician, but our doctor-patient relationship, as well as our relationship as people, is better and stronger than ever.  She understands me better than ever before, and I know I can be myself with her, without judgement.

I come to her with some really hard and really personal stuff, but somehow, she always knows just what to say.  She sees my heart.  When I feel like the world is against me, I know I can always count on Sharon to help me back up again, reminding me I am a person- not just a number, illness or burden. Screenshot 2015-10-10 at 6.31.08 PM (1) - Edited

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I could go on and on, but for now, let me just conclude with saying:  Sharon is the the smartest, kindest, strongest, most compassionate, most creative, most beautiful, most dedicated and all-around BEST PA I’ve ever known.  She is a huge blessing in my life, and I will spend the rest of my time on this Earth in appreciation and utter awe of all she did and continues to do in my life.  She is not just my PCP; she is my hero.

Dysautonomia Awareness Month: Day #6

Fact: DYSAUTONOMIA IS NOT RARE!

  • Neurocardiogenic Syncope (NCS) impacts 22% of the population
  • Postural Orthostatic Tachycardia Syndrome (POTS) 1 out of 100 teens and one to three million Americans of all ages, genders and races
  • Diabetic Autonomic Neuropathy occurs in 25% of diabetics.  Thats 69 million people worldwide!

There are many other forms of Dysautonomia.  Dysautonomia is not rare, it’s just rarely heard of.  We are actively working to change that!

Dysautonomia Awareness Month: Day #5

Fact: Young adults with Dysautonomia often face such severe symptoms that they are left tragically ill and socially isolated during the prime of their developing lives. Because the symptoms of these conditions are often invisible to the casual observer, most Dysautonomia patients don’t look sick. This tends to lead to a lack of understanding and support for the person suffering.